Extreme Prematurity - Practices, Bioethics, And The Law Part 1 ppsx

This page intentionally left blank P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 EXTREME PREMATURITY Extreme Prematurity: Practices, Bioethics, and the Law examines the controversial issues surrounding the clinical management of this group of neonates through the intervention of modern neonatal intensive care. The forgoing of life-sustaining treatment is of par- ticular importance. The subject matter is very relevant because of the alarming increase in multiple and preterm births, caused by the increase in women undergoing assisted reproductive procedures, and the large increase in premature labor. No recent book covers the subject in such comparable breadth. The first section of this very timely monograph covers the epi- demiology and practices in different parts of the world; the second section coversbioethics considerations, includingethical theories, moral principles, and quality-of-life issues; the third section covers national and international guidelines; and the last section covers medical law aspects in the United States and around the world. Geoffrey Miller is Professor of Pediatrics and Neurology at Yale University School of Medicine. i P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 ii P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 EXTREME PREMATURITY Practices, Bioethics, and the Law GEOFFREY MILLER Yale University School of Medicine iii cambridge university press Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, São Paulo Cambridge University Press The Edinburgh Building, Cambridge cb2 2ru, UK First published in print format isbn-13 978-0-521-86221-9 isbn-13 978-0-521-68053-0 isbn-13 978-0-511-24961-7 © Geoffrey Miller 2007 2006 Informationonthistitle:www.cambrid g e.or g /9780521862219 This publication is in copyright. Subject to statutory exception and to the provision of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. isbn-10 0-511-24961-6 isbn-10 0-521-86221-3 isbn-10 0-521-68053-0 Cambridge University Press has no responsibility for the persistence or accuracy of urls for external or third-party internet websites referred to in this publication, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. Published in the United States of America by Cambridge University Press, New York www.cambridge.org hardback p a p erback p a p erback eBook (EBL) eBook (EBL) hardback P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 FOR TRICIA v P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 vi P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 C ONTENTS Part 1: THE EXTREMELY PRETERM INFANT: EPIDEMIOLOGY, PERCEPTIONS, AND PRACTICES 1 Introduction page 3 2 Historical Aspects 9 3 Survival 11 4 Influence of Obstetric Management 16 5 Effect of Resuscitation in the Delivery Room 18 6 National Comparisons 20 7 Prediction of Outcome 23 8 Limit of Viability 24 9 Morbidity 25 10 School Age Outcome 29 11 Adolescence 32 12 Perceptions and Practices 34 13 Resource Expenditure 45 Part 2: BIOETHICS 14 Moral Theory 51 15 Autonomy 59 16 Beneficence and Nonmaleficence 62 vii P1: JZZ 0521862213pre CUFX052/Miller 0 521 86221 3 printer:cupusbw August 21, 2006 13:20 C ONTENTS 17 Justice 68 18 Sanctity of Life 70 19 Active and Passive Euthanasia 72 20 Personhood 74 21 Quality of Life and Best Interests 80 22 Futility 86 Part 3: REPORTS, OFFICIAL OPINIONS, AND GUIDELINES 23 United States 91 24 Canada 106 25 United Kingdom (UK) 110 26 France 116 27 Italy 121 28 Germany 122 29 International 123 Part 4: THE LAW 30 Introduction 135 31 U.S. Law 138 32 The United Kingdom 160 33 Canada 168 34 Australia 173 35 Japan 176 36 Italy, Germany, and Poland 177 37 France 179 38 The Netherlands 181 Part 5: EPILOGUE: TRUTH, TRUST, AND BOUNDARIES Epilogue: Truth, Trust, and Boundaries 187 References 197 Index 221 viii [...]... also include the extremely low birth weight (ELBW) infant born weighing less than 1, 000g The two are not synonymous as the latter may include infants who are small for gestational age and more mature than the former However, the literature includes both groups, and for the purposes of argument I do the same Extreme prematurity is uncommon, occurring in about 1% of live births (1) However, the moral dilemmas... practice. (12 15 ) ELBW infants account for nearly half of total perinatal mortality, despite being only a very small percentage of total live births. (16 ) Much of the improvement in mortality has occurred in the very and extremely preterm groups. (17 ,18 ) There can be considerable variation in the results of studies reporting mortality for the EPTI To some extent this is governed by the conduct of the studies, (19 ,20)... frequent active management of labor for gestations, they stated, that were previously considered as nonviable Overall, 85% were treated intensively, but the proportion rose from 74% in 19 83 19 85 to 91% in 19 92 19 94 In 19 83 19 90, 51% of live born infants born 23 to 27 weeks’ gestation died, and this decreased to 28% for those born from 19 92 to 19 96.( 41) The authors’ conclusions were that improving survival... this include the use of surfactant and steroids and an increase in the provision of artificial ventilation, as well as a change in attitudes In the United States, during the 19 90s, survival for infants born at 24 weeks’ gestation was reported as 33–57% and at 25 weeks was 60–75%.( 21 29) In the NICHD Neonatal Network Study, the findings were that babies born during 19 94 to 19 95 weighing 5 01 800g have a... 19 95 weighing 5 01 800g have a mortality rate of 43%, and 15 % of these were not artificially ventilated.(30) The reported survival for those born at 23 weeks is 20–25%, with reports in some centers of 41 48%.( 31) El-Metwally, Vohr, and Tucker determined the survival rates of infants born at 22 to 25 weeks’ gestation during the 19 90s in Rhode Island.( 21) The rate of fetal death (stillborn) was 24% Of those... there may be a conflict between the requirement and the obligation 10 3 S U R V I VA L F rom 19 80 to 2000, the infant mortality rate in the United States has been reduced from 12 .6 to 6.9 per 1, 000 live births.(9 ,10 ) This has occurred with an approximately 17 % increase in preterm birth rates,(9 ,11 ) and reductions in mortality have been highest for those with the lowest birth weights.(9) This has been mainly... steroids and exogenous surfactant, but also because of a willingness to treat the EPTI intensively In the large United Kingdom (UK) and Ireland populationbased study, reported in 2000 by Wood and colleagues,(42) data was derived from 4,004 births born between 20 and 25 weeks’ gestation There were only 1, 185 live births, of which about onethird died in the delivery room, and a further 43% died in the hospital... results of management, and differing subjective judgments from health professionals, parents, guardians, and the creators and arbiters of the law Attempts to resolve the 7 T H E E X T R E M E LY P R E T E R M I N FA N T conflict are sought from religion, bioethics and moral philosophy, sociocultural acceptance of certain behaviors, and the law, both civil and criminal But before these can be considered,... colleagues published the survival rates of 860 live births born at 24 and 25 weeks’ gestation from 13 tertiary centers.(35) At 24 weeks, survival was 56%, and it was 68% at 25 weeks Figures from Japan show impressive improvement over time Japanese neonatal mortality rates have fallen from 27.4 to 2.3 per 1, 000 live births between 19 50 and 19 93, and in 19 91 the survival of infants born less than 1, 000g reached... for example, whether the figures reported include total births, live births, or neonatal intensive care unit (NICU) admissions; whether the numbers were small or based on geographic populations; and whether there were consistent approaches to management Clearly this variability may introduce uncertainty and incomprehensibility into the counseling of parents Furthermore, one can speculate 11 T H E E X T . Paulo Cambridge University Press The Edinburgh Building, Cambridge cb2 2ru, UK First published in print format isbn -1 3 97 8-0 -5 2 1- 8 622 1- 9 isbn -1 3 97 8-0 -5 2 1- 6 805 3-0 isbn -1 3 97 8-0 - 51 1-2 496 1- 7 © Geoffrey Miller. Press. isbn -1 0 0-5 1 1-2 496 1- 6 isbn -1 0 0-5 2 1- 8 622 1- 3 isbn -1 0 0-5 2 1- 6 805 3-0 Cambridge University Press has no responsibility for the persistence or accuracy of urls for external or third-party internet. LAW 30 Introduction 13 5 31 U.S. Law 13 8 32 The United Kingdom 16 0 33 Canada 16 8 34 Australia 17 3 35 Japan 17 6 36 Italy, Germany, and Poland 17 7 37 France 17 9 38 The Netherlands 18 1 Part 5: EPILOGUE: